Epidermolysis Bullosa: Michael’s Story
While you usually come to Cupcakes and Cutlery looking for pretty photos and simple recipes today I need to share something a little bit different. 4 years ago we met the most special little boy, named Michael. He is funny and silly, just like you hope a 9-year-old boy would be. But he’s also the most brave human being I have ever come across.
He has a genetic skin disorder called Epidermolysis Bullosa. But the term “skin disorder” makes it sound tolerable. It is not. I’m sharing Michael’s story in the hopes that you will become aware of the disease, what it might be like for him to live with it and be moved to help in some way, whether it is to share his video, send in a donation or send positive thought vibes to our friend, Michael.
The video is not easy to watch. In fact, unless you have the blackest of hearts, you will cry. To be honest, even though we have known Michael for the last few years, and have been to his fundraisers, this video really showed us what it is like for Michael and his family on a daily basis.
I have so much love and respect for his parents, Heather and Ryan and the amazing job they are doing at running EB Research Partnership, and giving Michael a rich childhood despite his limitations.
Michael is so much more than this disease. He just wants to be like all the other kids and have fun. But he can’t be. His skin gets itchy and painful when the weather is hot. He can’t eat what all the other kids can because these blisters line his mouth and throat as well.
And he can’t participate in many of the activities at school for fear of running in to another kid or falling down. Although our school does their best to have him involved, he is often left out. But he is rarely without a smile and is a great friend to every student.
He is an absolute inspiration for kids and adults alike. My whole family is grateful to know him and his family and we look forward to the day they announce a cure.
This video, from a few years ago, shows some more of what we love about Michael. It also shows one of EB’s biggest fundraisers and supporters, Eddie Vedder.
He has been able to motivate his fans to donate money and raise awareness for this disorder which he accurately calls, “diabolical.” It’s going to take more, though, to change the lives of those living with Epidermolysis Bullosa.
If you can donate, that would be amazing but I know that extra money is pretty hard to come by. If nothing else will you please share this story on Facebook?
You can find out all the details about Epidermolysis Bullosa, and more about the mission of EB Research Partnership page. And if you ever run in to Eddie Vedder, please tell him thank you for being a spokesperson for a worthy cause.